[tri-med] ABR and Craniosynostosis

Hello all,
We got some good news recently-they have declared Charlotte's heart 
structurally normal! She does have some pulmonary hypertension but not too bad.
They have decided to do a surgery in February on her head-turns out the metopic 
suture closed early during my pregnancy and so her forehead is pointed. They 
said if we don't go in and release the suture pressure could build up in her 
head, etc. Has anyone else been through this? She has trigonencephaly which 
just means her head is shaped like a triangle. We found out this is related to 
her partial monosomy 9 rather than her partial trisomy 16. Any advice? Etc?
Charlotte also failed four OAE test for her hearing and is having an ABR this 
week. Anyone been through this? What could they possibly find out that could 
help her? Is a hearing aid a possbiltiy? What have other people done?
Thanks! 
Erin, mom to Charlotte, partial trisomy 16, partial monosomy 9, almost three 
months old!
 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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